Fund in Memory of
Goodwin Family

September first 2012 was a milestone for my husband Bill and me. It was our 50th wedding anniversary. For years we had planned a Mediterranean cruise to celebrate the occasion. On September 29th our daughter, Christy, took us to the airport to embark on our journey. She had called me the night before to tell me she was having some right chest pain that radiated to the back of her right shoulder & said she didn't feel very good. My mind skipped back to 4 days earlier when I received a call at work from our cardiologist. He told me he saw a Brugada's pattern on Christy's EKG. I was shocked. My husband's family had experienced 3 sudden deaths in healthy young people years earlier. It was suspected that their deaths may have been from an arrhythmia so my husband and our 2 daughters and 4 grandchildren have had regular screening EKGs for years. This was the first time an arrhythmia had been seen.
Christy had a Stress Test that same day and it was normal. She had no risk factors or Coronary Artery Disease except that her father has Coronary Artery Disease. She was an active, healthy 42 year old mother of 2 young children. I asked her if she had any other symptoms that I knew were related to heart problems, but she denied having any of these. I advised her to take a full strength aspirin anyhow. At the airport, I asked her how she was feeling and she said she was feeling some better and I instructed her to get the E.R. or call the EMS if she experienced any of the symptoms I had mentioned or if the pain worsened. We hugged her and the kids good-bye and boarded our plane. Christy continued running errands and going about her life. Many hours later we arrived in Rome, tired but excited. We had taken a global phone, but it did not work.
As we were checking in at our hotel in Rome, the manager told us in broken English, to call our daughter, Becky. It was about 1:00 A.M. Indiana time. This couldn't be good. Bill placed the call. After listening for a while he said: “They had to shock her?” My heart was in my mouth. He handed me the phone. Becky told me Christy's pain had gotten worse and she had dutifully gone to the E.R. Her heart had stopped about 2 hours after arriving at the hospital and that they had to do CPR and shock her to bring her back to life. I was beside myself. I just kept saying over and over, “She arrested???” My brain couldn't accept it. Praise God she was in the E.R.! Having been a hospital nurse for 37+ years my mind was racing trying to assess her from thousands of miles away. “Is she on a ventilator?” I asked. “No,” my daughter replied. Whew! “Is she alert?” “No.” I'm thinking to myself: brain damage or sedation? “I think she's sleeping.” Sensing my stage 4 anxiety, Becky said, “She's going to be alright, mom.” I had to get home NOW! There were no more flights out of Rome until the next day. The hours waiting were agonizing.
When we finally arrived home and got to the hospital it was so good to be able to hug our daughter. Later I found out that one of our cardiologists who was on call that fateful night immediately took her to the Cardiac Cath. Lab and worked feverishly for 2 ½ hours to save her life. He found that her LAD, the main artery feeding the heart, was blocked with blood clots. He removed as many as he could and noticed that the lining of her LAD was dissecting. He was able to put in 2 stents to keep the artery open. He sent her to the Coronary ICU with a prognosis that read: “Guarded”. A week later she went home on a Life Vest that would detect a cardiac arrest and defibrillate her if needed. I went home with her and lived with her for a while. Her recovery has had some bumps in the road. Her life had changed literally in a heart beat. She had some memory problems and trouble with word finding. Some doctors thought that a few blood clots might have escaped to the brain. She was on Coumadin and other blood thinners and heart medications. We had scary visits to the E.R. with chest pain. She went through numerous tests. There was a lot of head scratching among the many specialists that she saw. One thing they all agreed on was that she was a “difficult case”.
She was referred by our cardiologist to Mayo Clinic where we have seen some specialists in Sudden Arrhythmia Death Syndrome and Spontaneous Coronary Artery Dissection. Multiple tests have been done and we have met with a Geneticist as well. She has had a Defibrillator /Pacemaker implanted-which made us all breathe a little easier. A year later she and the kids had a cake to celebrate her first anniversary of surviving death. She’s been able to return to work 4 days a week in her profession as an Occupational Therapist. She still struggles with and chest pain, but has come a very long way.
Prior to all this happening, I had been thinking about volunteering in some capacity, but nothing had jelled for me. Then one night last winter, I awakened in the middle of the night and felt that I was strongly being urged to prevent another death in this family. I felt enthused, I had a mission. The next day I told my daughter Becky about it and she said “you've got to be kidding!” I replied, “no, why do you say that?” She recounted that she had the same experience in the middle of the night too!
Knowing that Brugada's Syndrome is 50 % inheritable, I knew there were members of Bill's family that were at risk. So, I told Dr. Ackerman about my mission and asked him to guide me in who needed to be screened. He identified specific family members who needed a screening Brugada EKG and agreed to read all of them. Knowing the Brugada EKG isn't done at most hospitals, I obtained the protocol from Mayo Clinic. My mission was to prevent more deaths in our family and also assist other families in screening for Brugada and other sudden death arrhythmias. Therefore, I took the following steps to make that happen.
I knew the first objective would be to get a large & busy family on board with this. I enlisted Bill's sister, who had lost a brother, a son and a daughter to sudden death, all at early ages. Bill's sister was on board. She helped organize a meeting at one of her grandson's homes. I began to form a plan to present all the information they needed about Brugada's and how to get the screening EKGs done. We had a good turnout and had food – a necessity for any family gathering. By the time of our get together, everyone had heard about Christy's scrape with death. In my presentation I explained what Brugada's syndrome was and how it causes sudden deaths and that it is 50% inheritable. I also discussed some symptoms that might be experienced with Brugada's and precautions to take to prevent problems. I then reconstructed the chain of events that had occurred in Bill's family leading to the three sudden deaths in our niece, nephew, and Bill's brother.
Christy told of her experience of dying and being revived and her continuing journey. There were very few dry eyes in the room. All were eager to get screening EKGs. I brought instructions I had typed on preparing for the EKGs and also signs and symptoms of Brugada's and the address for the SADS website and a Brugada's website that listed drugs to avoid. I informed them that they would need an order from their doctor for the EKG and for insurance purposes the reason for the EKG must be “family history of sudden death.” I also told them where to report to at the hospital and what to wear.
Meanwhile, I had spoken with the manager of the EKG Department at the hospital to set up times after hours for the screening EKGs. We chose 2 sessions, one 4 hour evening session during the week and one 4 hour session on a Saturday morning. I gave the manager the protocol for the Mayo Clinic Brugada EKG so she could get some of her techs trained to do it. I also contacted the manager of Registration to let her know what we were doing, so she got all the family pre-registered before they came in to save time and lessen the load on Registration after hours. Then Bill and I were at the hospital during the screenings to direct family members and help answer questions. I felt it was important to make the whole process as easy as possible for the family members and the hospital and doctor's offices. All were very cooperative and helpful. After all was done I made brownies and took them along with a thank-you note to the hospital workers who so generously gave us their time and support.

Dr. Ackerman needed the original EKGs as copies are hard to read. Due to HIPPA laws, it was deemed that the best thing to do was to have the family members pick up their original EKGs from the cardiologist's office after they had been read and then send them to me and I then mailed them via certified mail to Dr. Ackerman with notes as to how each family member was related to Christy, per Dr. Ackerman's nurse's request.
All in all everything went pretty smoothly. We ended up screening 25 family members ranging in age from 4 months to 75 years. These efforts opened the door for more family members to have DNA testing and one has had a Defibrillator implanted and 2 more have been identified as needing them, but have not had them implanted yet. Also, a 6 year old has been identified as having Brugada's , but is not a candidate due to his young age and that he has not been symptomatic. Our family has been entered in a couple of Research Projects at Mayo Clinic and our prayer is that more genes will be identified in the near future and that lives will be saved. Of course, a negative result on and EKG does not mean a person doesn't have Brugada Syndrome. So, the family was advised to follow up with a cardiologist for continued surveillance. And to remain alert and take precautions.
The next goal in my journey is to educate school nurses and educators about Sudden Arrhythmia Death Syndrome, especially where our family members attend school. Of course I have already talked to them at my grand-kid's school!
Ironically, a mutant gene has brought this family closer together. The journey continues...........